In the last post I provided an ultra detailed account of all my medical problems. In this one, I’m providing the quick and dirty version. If you have similar problems to me, I strongly recommend reading the longer account, but if not, the short version should be more than sufficient background.
For years I saw a different specialist for each disorder I had. I also had a primary care provider who would document the findings of all of these other doctors, but he could never tell me what it added up to (except for occasionally saying “you’re immunologically fucked”). So long as they kept me stocked on my meds, and had some scientific or medical explanation for what was wrong with me, I felt sort of satisfied. I rode this medical merry-go-round unquestioningly for twelve years.
Then last year I hit rock bottom. All of these problems sort of hit at once. The thing that was really causing me the most trouble was the irritable bowel syndrome. I’d given up most foods other than milk, bread, tomatoes, and meat, but somehow I was still really sick. I already knew I was allergic to all legumes (no more tofu, tempeh, beans, hummus, or veggie burgers) and a lot of vegetables, so I couldn’t really handle another food allergy diagnosis. I felt like if they took anything else away from me, I would crack and stab a specialist in the kidney (being sickly, I know just where the kidneys are located).
In any case, I got to a point where my body was hardly digesting food. Almost every meal passed right through me with little thought on the part of my digestive system. I felt like I had a knife in my stomach, a fire in my heart, and I was nauseated about half the time. I was also experiencing more headaches, sinus problems, and asthma attacks. I was always run-down and depressed, which is what happens when you’re badly malnourished. I felt like I was never going to get better, and was seriously wondering if I had anything left to live for. Somehow I was working my ass off and getting by professionally. God knows how.
I had totally exhausted my options within traditional Western medicine. Every time I saw a specialist they’d rehash the diagnosis of the specialists before them, and it was starting to feel like a waste of my time. I was having a hard time dealing with any asthma triggers at all (mold, seasonal allergies, exercise, the common cold), and my visits to my asthma doctor were getting increasingly desperate. “So … if I move I won’t get better… and if I take this medicine I won’t get better… and I took that one and I didn’t get better… So there’s really nothing you can do at all. Nothing that can make me feel alright EVER…”
I made an appointment to see an acupuncturist because I figured I had nothing to lose. I couldn’t get sicker, could I?
I learned from her that, as I’d already been thinking, all of these auto-immune disorders ARE related. Chinese medicine is a holistic practice, so they look to how certain meta-imbalances affect multiple systems. She said that the pancreas and intestines support immunity and the lungs, and said I had to improve those systems before I could expect to feel better on the asthma and allergies front. I didn’t believe it at first, but she gave me reason to believe.
She put me on herbs to balance my system and supplements to make up for my pancreatic deficiencies. And much to my surprise I STARTED DIGESTING FOOD AGAIN. All of a sudden, within a day or so of taking the supplements I was getting nutrition from the things I ate. It wasn’t a complete fix, and I’d learn shortly thereafter that my true and worst allergy was milk. I gave up milk and my asthma, allergies, and digestive problems mostly went away.
That’s not to say that I’m totally healthy and immunologically fabulous now. I still have to put a lot of work into staying healthy, and staving off my body’s natural imbalances. A cold can still be a lot more dangerous for me, and every now and then when I exercise I get that certain “oh, I can’t breathe” feeling. I can still be totaled by some milk powder put in bread at a fast food place. Or at a fancy restaurant. Basically anywhere that uses generic food service/SYSCO food is off my list. Hell, I’m on a whole anti-inflammatory diet now where I don’t eat any of my allergens (milk, legumes, and a handful of fruits and vegetables) OR wheat or sugar, so most restaurants are off my list in general.
This is partially my impetus for coming out as sickly. I gave up milk almost a year ago and people were like “OMG! How can you do that?” “HOW do you not feel soooo deprived” “Wow… that just sucks soooo bad!!!” Actually, in my experience having people talk about your food allergies is actually worse than having them. Sure it sucks to know I can probably never eat some local organic free range cheese again, but I know that avoiding it keeps me healthy. That’s worth it to me. Telling people wasn’t as easy or natural, and didn’t have a similar pay off. And you have to tell the story to EVERYONE who cooks for you, so you get pretty sick of people ooohing and aaahing over your troubles. The story never gets more fun to tell, but it’s always novel and shocking for new people to hear.
So I had to start telling people how sick I was to explain why I wasn’t eating milk any more. Most of my friends and family weren’t vegan, so they thought that it had to be something really bad to make giving up milk seem like an option. So I started telling people about all of the underlying problems. How I had undiagnosed digestive problems for all of high school, how the doctors never helped anyway once I was diagnosed, and how the times when I wasn’t returning calls it was often because I was too sick to get out of bed. And I experienced something I didn’t expect. I thought it was just a horrible story like any other horrible story, and that people would get over it easily enough. But people’s reactions were bigger than that, and it made me realize that chronic illness was bigger than I allowed it to be. It wasn’t just a road trip from hell, or a hangover of legendary proportions, or a boring wedding. It really was different than most people’s experience of life. Chronic illness had been one of the defining features of my life for years, and somehow I just never told anyone.
So here I am now, telling everyone, and telling you people on the internet. While the process of coming out as sickly has often been difficult and painful, the moments when people finally get it make it worth it. While I still ask for as few accommodations as possible, being that kind of person, it secretly warms my frosty heart whenever someone says “I made these brownies soy, milk, and gluten free for you.” Perhaps more touching are the rare moments where I meet other people that are sickly too, or others with secret food allergies. It is always a moment of triumph, of pleasure in difficulty, when you meet someone who has gone through a similar level of hell. Having the understanding of people who’ve also worn hospital bracelets is invaluable. While the internet is probably not as warm and inviting as my real-life interactions with other sickly people, it is my hope that by telling my story, and having people tell theirs, we can begin a whole other process of healing. Chronic physical illness has mental, emotional, and social tolls that often take a sideline to whatever is wrong with our tangible bodies, but it’s essential to find support, self-respect, and a life worth living, regardless of ability or impairment.
Posts
No comments:
Post a Comment